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Delayed Diagnosis and Treatment Among Children with Autism Who Experience Adversity

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Abstract

The effects of family adverse childhood experiences (ACEs) on timing of ASD diagnoses and receipt of therapies were measured using data from the 2011–2012 National Survey of Children’s Health. Parametric accelerated failure time models estimated the relationship between family ACEs and both timing of ASD diagnosis and receipt of therapies among US children (age 2–17 years; N = 1624). Compared to children without family ACEs, the adjusted effects of 1–2 and ≥ 3 ACEs resulted in prolonged time of diagnoses with time ratios of 1.17 and 1.23. Report of 1–2 and ≥ 3 ACEs were associated with a 22 and 27% increase in the median age of entry into services. ACEs may pose significant barriers to diagnoses and treatment of children with ASD.

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Abbreviations

NSCH:

National Survey of Children’s Health

ASD:

Autism spectrum disorder

ACEs:

Adverse childhood experiences

References

  • Andersen, R. M. (1995). Revisiting the behavioral model and access to medical care: Does it matter? Journal of Health & Social Behavior, 36(1), 1–10.

    Article  Google Scholar 

  • Auslander, W. F., Thompson, S. J., Dreitzer, D., & Santiago, J. V. (1997). Mothers’ satisfaction with medical care: Perceptions of racism, family stress, and medical outcomes in children with diabetes. Health & Social Work, 22(3), 190–199.

    Article  Google Scholar 

  • Balistreri, K. S. (2015). Adverse childhood experiences, the medical home, and child well-being. Maternal and Child Health Journal, 19(11), 2492–2500.

    Article  PubMed  PubMed Central  Google Scholar 

  • Berg, K. L., Shiu, C. S., Acharya, K., Stolbach, B. C., & Msall, M. E. (2016). Disparities in adversity among children with autism spectrum disorder: A population-based study. Developmental Medicine & Child Neurology, 58(11), 1124–1131.

    Article  Google Scholar 

  • Boyle, C. A., Boulet, S., Schieve, L. A., Cohen, R. A., Blumberg, S. J., Yeargin-Allsopp, M., … Kogan, M. D. (2011). Trends in the prevalence of developmental disabilities in US children, 1997–2008. Pediatrics 127(6), 1034–1042.

    Article  PubMed  Google Scholar 

  • Braveman, P. A., Cubbin, C., Egerter, S., Chideya, S., Marchi, K. S., Metzler, M., & Posner, S. (2005). Socioeconomic status in health research: One size does not fit all. The Journal of American Medical Association, 294(22), 2879–2888.

    Article  Google Scholar 

  • Bynum, L., Griffin, T., Ridings, D. L., Wynkoop, K. S., Anda, R. F., Edwards, V. J., … Croft, J. B. (2010). Adverse childhood experiences reported by adults—five states, 2009. Morbidity & Mortality Weekly Report, 59(49), 1609–1613.

    Google Scholar 

  • Centers for Disease Control and Prevention. (2012). Prevalence of autism spectrum disorders—autism and developmental disabilities monitoring network, 14 sites United States 2008. Morbidity and Mortality Weekly Reports, 61(SS-03), 1–19.

    Google Scholar 

  • Centers for Disease Control and Prevention. (2014). Prevalence of autism spectrum disorders-Autism and developmental disabilities monitoring network, 11 sites, United States, 2010. Morbidity and Mortality Weekly Reports, 63(2), 1–21.

    Google Scholar 

  • Chen, C. Y., Liu, C. Y., Su, W. C., Huang, S. L., & Lin, K. M. (2008). Urbanicity-related variation in help-seeking and services utilization among preschool-age children with autism in Taiwan. Journal of Autism and Developmental Disorders, 38(3), 489–497.

    Article  PubMed  Google Scholar 

  • Child and Adolescent Health Measurement Initiative (CAHMI). (2012). 2011–2012 National Survey of Children’s Health: Child Health Indicator and Subgroups SAS Codebook, version 1.0″ 2013, data resource center for child and adolescent health. Retrieved December, 02, 2015 from http://www.childhealthdata.org.

  • Child and Adolescent Health Measurement Initiative (CAHMI). (2016). National Survey of Children’s Health 2011/2012. Data Resource Center for Child and Adolescent Health. Retrieved January, 12, 2016 from http://www.childhealthdata.org.

  • Christensen, D. L., Bilder, D. A., Zahorodny, W., Pettygrove, S., Durkin, M. S., Fitzgerald, R. T., … Yeargin-Allsopp, M. (2016). Prevalence and characteristics of autism spectrum disorder among 4-year-old children in the autism and developmental disabilities monitoring network. Journal of Developmental & Behavioral Pediatrics, 37(1), 1–8.

    Article  Google Scholar 

  • Cronholm, P. F., Forke, C. M., Wade, R., Bair-Merritt, M. H., Davis, M., Harkins-Schwarz, M., … Fein, J. A. (2015). Adverse childhood experiences: expanding the concept of adversity. American Journal of Preventive Medicine, 49(3), 354–361.

    Article  PubMed  Google Scholar 

  • Daniel, K. L., Prue, C., Taylor, M. K., Thomas, J., & Scales, M. (2009). ‘Learn the signs. Act early’: A campaign to help every child reach his or her full potential. Public Health, 123, e11–e16.

    Article  PubMed  Google Scholar 

  • Daniels, A. M., Halladay, A. K., Shih, A., Elder, L. M., & Dawson, G. (2014). Approaches to enhancing the early detection of autism spectrum disorders: A systematic review of the literature. Journal of the American Academy of Child & Adolescent Psychiatry, 53(2), 141–152.

    Article  Google Scholar 

  • Desmond, M., Gershenson, C., & Kiviat, B. (2015). Forced relocation and residential instability among urban renters. Social Service Review, 89(2), 227–262.

    Article  Google Scholar 

  • Duchon, L. M., Weitzman, B. C., & Shinn, M. (1999). The relationship of residential instability to medical care utilization among poor mothers in New York City. Medical Care, 37(12), 1282–1293.

    Article  PubMed  Google Scholar 

  • Esler, A. N., Bal, V. H., Guthrie, W., Wetherby, A., Weismer, S. E., & Lord, C. (2015). The autism diagnostic observation schedule, toddler module: Standardized severity scores. Journal of Autism and Developmental Disorders, 45(9), 2704–2720.

    Article  PubMed  PubMed Central  Google Scholar 

  • Fairbrother, G., Kenney, G., Hanson, K., & Dubay, L. (2005). How do stressful family environments relate to reported access and use of health care by low-income children? Medical Care Research and Review, 62(2), 205–230.

    Article  PubMed  Google Scholar 

  • Felitti, V. J., & Anda, R. F. (2010). The relationship of adverse childhood experiences to adult medical disease, psychiatric disorders and sexual behavior: Implications for healthcare. In E. Vermetten & R. Lanius (Eds.), The hidden epidemic: The impact of early life trauma on health and disease (pp. 77–87). Cambridge: Cambridge University.

    Chapter  Google Scholar 

  • Felitti, V. J., Anda, R. F., Nordenberg, D., Williamson, D. F., Spitz, A. M., Edwards, V., … Marks, J. S. (1998). Relationship of childhood abuse and household dysfunction to many of the leading causes of death in adults: The Adverse Childhood Experiences (ACE) Study. American Journal of Preventive Medicine, 14(4), 245–258.

    Article  PubMed  Google Scholar 

  • Fountain, C., King, M. D., & Bearman, P. S. (2011). Age of diagnosis for autism: Individual and community factors across 10 birth cohorts. Journal of Epidemiology and Community Health, 65(6), 503–510.

    Article  PubMed  Google Scholar 

  • Freedman, B. H., Kalb, L. G., Zablotsky, B., & Stuart, E. A. (2012). Relationship status among parents of children with autism spectrum disorders: a population-based study. Journal of Autism and Developmental Disorders, 42(4), 539–548.

    Article  PubMed  Google Scholar 

  • Goin-Kochel, R. P., Mackintosh, V. H., & Myers, B. J. (2006). How many doctors does it take to make an autism spectrum diagnosis? Autism: The International Journal of Research and Practice, 10(5), 439–451.

    Article  Google Scholar 

  • Hartley, S. L., Barker, E. T., Seltzer, M. M., Floyd, F., Greenberg, J., Orsmond, G., & Bolt, D. (2010). The relative risk and timing of divorce in families of children with an autism spectrum disorder. Journal of Family Psychology, 24(4), 449.

    Article  PubMed  PubMed Central  Google Scholar 

  • Hertz-Picciotto, I., & Delwiche, L. (2009). The rise in autism and the role of age at diagnosis. Epidemiology (Cambridge, Mass.), 20(1), 84.

    Article  Google Scholar 

  • Howlin, P., & Asgharian, A. (1999). The diagnosis of autism and Asperger syndrome: findings from a survey of 770 families. Developmental Medicine and Child Neurology, 41(12), 834–839.

    Article  PubMed  Google Scholar 

  • Ihrke, D. K., & Faber, C. S. (2012). Geographical mobility: 2005 to 2010 (Current Population Reports, P20-567). Retrieved from http://www.census.gov/prod/2012pubs/p20-567.pdf.

  • Janicke, D. M., Finney, J. W., & Riley, A. W. (2001). Children’s health care use: A prospective investigation of factors related to care-seeking. Medical Care, 39(9), 990–1001.

    Article  PubMed  Google Scholar 

  • Jelleyman, T., & Spencer, N. (2008). Residential mobility in childhood and health outcomes: A systematic review. Journal of Epidemiology and Community Health, 62(7), 584–592.

    Article  PubMed  Google Scholar 

  • Kullgren, J. T., McLaughlin, C. G., Mitra, N., & Armstrong, K. (2012). Nonfinancial barriers and access to care for US adults. Health Services Research, 47(1pt2), 462–485.

    Article  PubMed  PubMed Central  Google Scholar 

  • Larsson, H. J., Eaton, W. W., Madsen, K. M., Vestergaard, M., Olesen, A. V., Agerbo, E., … Mortensen, P. B. (2005). Risk factors for autism: Perinatal factors, parental psychiatric history, and socioeconomic status. American Journal of Epidemiology, 161(10), 916–925.

    Article  PubMed  Google Scholar 

  • Lee, E. T., & Wang, J. (2003). Statistical methods for survival data analysis (Vol. 476). Hoboken, NJ: Wiley.

    Book  Google Scholar 

  • Levy, S. E., Giarelli, E., Lee, L. C., Schieve, L. A., Kirby, R. S., Cunniff, C., … Rice, C. E. (2010). Autism spectrum disorder and co-occurring developmental, psychiatric, and medical conditions among children in multiple populations of the United States. Journal of Developmental & Behavioral Pediatrics, 31(4), 267–275.

    Article  Google Scholar 

  • Maïano, C., Normand, C. L., Salvas, M. C., Moullec, G., & Aimé, A. (2015). Prevalence of school bullying among youth with autism spectrum disorders: A systematic review and meta-analysis. Autism Research, 9(6), 601–615.

    Article  PubMed  Google Scholar 

  • Mandell, D. S., Listerud, J., Levy, S. E., & Pinto-Martin, J. A. (2002). Race differences in the age at diagnosis among Medicaid-eligible children with autism. Journal of the American Academy of Child & Adolescent Psychiatry, 41(12), 1447–1453.

    Article  Google Scholar 

  • Mandell, D. S., Novak, M. M., & Zubritsky, C. D. (2005). Factors associated with age of diagnosis among children with autism spectrum disorders. Pediatrics, 116(6), 1480–1486.

    Article  PubMed  PubMed Central  Google Scholar 

  • Mandell, D. S., Walrath, C. M., Manteuffel, B., Sgro, G., & Pinto-Martin, J. A. (2005). The prevalence and correlates of abuse among children with autism served in comprehensive community-based mental health settings. Child Abuse & Neglect, 29(12), 1359–1372.

    Article  Google Scholar 

  • Mandell, D. S., Wiggins, L. D., Carpenter, L. A., Daniels, J., DiGuiseppi, C., Durkin, M. S., … Shattuck, P. T. (2009). Racial/ethnic disparities in the identification of children with autism spectrum disorders. American Journal of Public Health, 99(3), 493–498.

    Article  PubMed  PubMed Central  Google Scholar 

  • Mazurek, M. O., Handen, B. L., Wodka, E. L., Nowinski, L., Butter, E., & Engelhardt, C. R. (2014). Age at first autism spectrum disorder diagnosis: The role of birth cohort, demographic factors, and clinical features. Journal of Developmental & Behavioral Pediatrics, 35(9), 561–569.

    Article  Google Scholar 

  • Patel, K., Kay, R., & Rowell, L. (2006). Comparing proportional hazards and accelerated failure time models: An application in influenza. Pharmaceutical Statistics, 5(3), 213–224.

    Article  PubMed  Google Scholar 

  • Roberts, A. L., Lyall, K., Rich-Edwards, J. W., Ascherio, A., & Weisskopf, M. G. (2016). Maternal exposure to intimate partner abuse before birth is associated with autism spectrum disorder in offspring. Autism: The International Journal of Research and practice, 20(1), 26–36.

    Article  Google Scholar 

  • Rosenberg, R. E., Landa, R., Law, J. K., Stuart, E. A., & Law, P. A. (2011). Factors affecting age at initial autism spectrum disorder diagnosis in a national survey. Autism Research and Treatment, 2011, 1–11.

    Google Scholar 

  • Shattuck, P. T., Durkin, M., Maenner, M., Newschaffer, C., Mandell, D. S., Wiggins, L., … Baio, J. (2009). Timing of identification among children with an autism spectrum disorder: Findings from a population-based surveillance study. Journal of the American Academy of Child & Adolescent Psychiatry, 48(5), 474–483.

    Article  Google Scholar 

  • Starfield, B., & Shi, L. (2004). The medical home, access to care, and insurance: a review of evidence. Pediatrics, 113(Supplement 4), 1493–1498.

    PubMed  Google Scholar 

  • StataCorp, L. P. (2013). Stata statistical software: Release 13. College Station, TX: StataCorp LP.

    Google Scholar 

  • Twyman, K. A., Maxim, R. A., Leet, T. L., & Ultmann, M. H. (2009). Parents’ developmental concerns and age variance at diagnosis of children with autism spectrum disorder. Research in Autism Spectrum Disorders, 3(2), 489–495.

    Article  Google Scholar 

  • Valicenti-McDermott, M., Hottinger, K., Seijo, R., & Shulman, L. (2012). Age at diagnosis of autism spectrum disorders. The Journal of Pediatrics, 161(3), 554–556.

    Article  PubMed  Google Scholar 

  • Wiggins, L. D., Baio, J. O. N., & Rice, C. (2006). Examination of the time between first evaluation and first autism spectrum diagnosis in a population-based sample. Journal of Developmental & Behavioral Pediatrics, 27(2), S7.

    Google Scholar 

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Funding

This study was supported by Grant R40MC Autism Intervention Research Program, from the Maternal and Child Health Bureau Health Resources and Services Administration, Department of Health and Human Services. Dr. Msall and Dr. Acharya’s efforts were also supported in part by T73 MC11047 HRSA.

Financial Disclosure

The authors have no financial relationships relevant to this article to disclose.

Author information

Authors and Affiliations

  1. Temple University College of Public Health, 1700 N. Broad, Philadelphia, PA, 19086, USA

    Kristin L. Berg

  2. Children’s Hospital of Philadelphia, Philadelphia, PA, USA

    Kristin L. Berg

  3. University of Illinois at Chicago, Chicago, IL, USA

    Kruti Acharya

  4. Delaware County Community College, Media, PA, USA

    Cheng-Shi Shiu

  5. University of Chicago Medicine, Chicago, IL, USA

    Michael E. Msall

  6. University of Chicago Comer Children’s Hospital, and Kennedy Research Center on Intellectual and Developmental Disabilities, Chicago, IL, USA

    Michael E. Msall

Authors
  1. Kristin L. Berg
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  2. Kruti Acharya
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  3. Cheng-Shi Shiu
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  4. Michael E. Msall
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Contributions

KLB conceived of the study, participated in its design and coordination and drafted the manuscript; KA participated in the design and interpretation of the data and helped to draft the manuscript; CS participated in the design of the study and performed the statistical analysis; MEM participated in its design and interpretation of data. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Kristin L. Berg.

Ethics declarations

Conflict of interest

The authors have no conflict of interest relevant to this article to disclose.

Ethical Approval and Informed Consent

This manuscript is based upon publically available, secondary data from the Data Resource Center for Child and Adolescent Health. The authors requested the dataset and codebook and signed a user agreement form, in accordance with procedures. This study was exempt from human subjects review by the Temple University Institutional Review Board.

Appendices

Appendix 1

Adverse Childhood Experiences Scale

2011–2012 National Survey of Children’s Healtha

1

Economic hardship (living in a household that often had difficulty affording basic necessities such as housing or food)

2

Living with a parent who was divorced or separated since the child’s birth

3

Living with a parent who died

4

Living with a parent who served time in jail after the child was born

5

Witnessing intimate partner violence

6

Witnessing or was the victim of violence in their neighborhood

7

Living with someone who was mentally ill, suicidal, or severely depressed for more than a couple of weeks

8

Living with someone who had a problem with alcohol or drugs

9

Having been discriminated against because of race/ethnicity

  1. aNational Survey of Children’s Health (2012). Child and Adolescent Health Measurement Initiative (CAHMI), 2011–2012 NSCH: Child Health Indicator and Subgroups SAS Codebook, Version 1.0”, 2013, Data Resource Center for Child and Adolescent Health, sponsored by the Maternal and Child Health Bureau. Retrieved December, 02, 2015 from http://www.childhealthdata.org

Appendix 2

Neighborhood variablesa

Neighborhood amenities/detracting elements

Amenities: counts how many of four amenities are present in the children’s neighborhoods

Detractors: counts how many of three detracting elements are present in children’s neighborhoods

Amenities

If the following places and things are available to children in your neighborhood, even if [CHILD’S NAME] does not actually use them

1. Sidewalks or walking paths?

2. A park or playground area?

3. A recreation center, community center, or boys’ or girls’ club?

4. A library or bookmobile?

DETRACTING

5. Is there litter or garbage on the street or sidewalk?

6. How about poorly kept or dilapidated housing?

7. How about vandalism such as broken windows or graffiti?

Neighborhood social support

The threshold for living in a supportive neighborhood is a mean score of 2.25 or higher, indicating that no more than one item responses was one of the “disagree” options

Social support

Respondents were asked whether they strongly agree, somewhat agree, somewhat disagree, or strongly disagree with each statement. Only children with valid responses on at least three items are included in the denominator

To score this indicator, item responses are assigned values (1–4) and an average is calculated for eligible cases

1. “People in my neighborhood help each other out.”

2. “We watch out for each other’s children in this neighborhood.”

3. “There are people I can count on in this neighborhood.”

4. “If my child were outside playing and got hurt or scared, there are adults nearby who I trust to help my child.”?

  1. aAlthough we controlled for neighborhood variables, we did not include these variables in our tables or manuscript text for a variety of reasons. First, our primary focus was on the relationship between ACEs and access to diagnosis. Secondly, the magnitude and direction of the association between neighborhood context and access to diagnosis/services was largely non-significant and difficult to interpret due to conflicting results. By far, the most powerful residential variable was mobility, which we reported in our table and manuscript. We plan to do additional analyses and focus on neighborhood context in a subsequent manuscript

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Berg, K.L., Acharya, K., Shiu, CS. et al. Delayed Diagnosis and Treatment Among Children with Autism Who Experience Adversity. J Autism Dev Disord 48, 45–54 (2018). https://doi.org/10.1007/s10803-017-3294-y

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